Just tried ASV and I hate it. Help?

[Broomstick]

Broomstick, did you ever try the BiPAP ST?  It's not for everyone, but for some reason, it sounds like you.

I've managed to skip entirely over BIPAP, and have been wondering "what if" ever since. Currently looking at one on craigslist (VAUTO though) as I no longer have the patience for participating in the CIRCUS of waiting weeks for an appointment, then weeks for approval, and weeks to actually receive the machine; perhaps only to find out it won't help me.

Now I'm wondering if theres such thing as a lower airway obstruction/narrowing. Perhaps the machines can only inflate the upper airway and have determined that any additional pressure they give is not improving anything and then it backs down the pressure and assumes that the current state of my airway must be its maximum.

[SarcasticDave94]

Broomstick,
You're probably aware, but the ST is a specialized device so it's not just BPAP as in the next step after CPAP or APAP. It's somewhat like ASV, but it's timed. Nevertheless, it might be what you need as it sounds like ASV isn't working for you.

[Sleeprider]

The Vauto is great if you don't have central apnea. The ST can produce high pressures, pressure support and backup triggering of IPAP. I just honestly don't know what you need. I sympathize with your persistence and lack of success and comfort.

[Broomstick]

Broomstick,
You're probably aware, but the ST is a specialized device so it's not just BPAP as in the next step after CPAP or APAP. It's somewhat like ASV, but it's timed. Nevertheless, it might be what you need as it sounds like ASV isn't working for you.

Timed or not, my biggest problem is the struggle to breathe. Thats whats waking me up, thats whats keeping me from resuming breathing with a mask on.

Tomorrow we are gonna do an experiment. After I wake up and can't breathe with the machine anymore, I'm gonna set it to a CPAP of 20, press it against my face to breathe in, take it away to breathe out. If that doesn't work, 25. If that doesn't work, no machine is gonna help me.

[sheepless]

you might learn something from you're experiment. I'm thinking there's a difference between sleep & awake breathing that won't be accounted for though. & if awake breathing is a problem, you might need attention beyond cpap(?).

[Broomstick]

you might learn something from you're experiment. I'm thinking there's a difference between sleep & awake breathing that won't be accounted for though. & if awake breathing is a problem, you might need attention beyond cpap(?).

Awake breathing is a problem, but only after sleeping and laying down.

[SarcasticDave94]

I'm certainly not a doctor in any field, but it's sounding like this maybe isn't related to apnea but some other breathing ailment.

[Broomstick]

Yeah, the air isn't going deep down  into me. When I sit up, it does and it feels amazing.

It's like my lungs simply can't expand enough laying down. Forced air feels worse than no machine at all at that point.

I don't know what it is about sleep that is changing me, but my body is different upon waking up. I've been awake for over an hour now, laying down the whole time, got up to the bathroom, layed back down, and I'm still not right.

Again, I could have done a better job explaining the problem to doctors. I'm starting fresh with new doctors and I'm gonna be very specific from now on. 

If a doctor says he is gonna adjust the machine and to come back in a month, I'm gonna say HELL NO. I know that won't work. I would know that it didn't work in 1 day. Meanwhile I wouldn't be able to see someone again for weeks.

That's the circus I've been going through. Except with these people always wanted to schedule me back in THREE months. No. No more.

[WillSleep]

Tomorrow we are gonna do an experiment. After I wake up and can't breathe with the machine anymore, I'm gonna set it to a CPAP of 20, press it against my face to breathe in, take it away to breathe out. If that doesn't work, 25. If that doesn't work, no machine is gonna help me.

A couple of additional experiment steps ..
 
1).  Cant breath or more constrained breathing through a nasal mask but at that same moment can breath (or breath better with mouth wide open and trying to mouth breath)  >> Then there is an restriction above the mouth.

2).  Cant breath well lying on my back or just sitting up but can breath better while lying on:

• Left side
  
• Right side
  
• Stomach
  
• Face down in a with my head in the cradle of a massage table
  

You may locate at least contributing constrictions or have shown that the issue is less likely from a soft tissue blockage anywhere above the jaw.   

Maybe a new/better for you Doc?

Best of Luck!

WillSleep

[WillSleep]

Broomstick,
You're probably aware, but the ST is a specialized device so it's not just BPAP as in the next step after CPAP or APAP. It's somewhat like ASV, but it's timed. Nevertheless, it might be what you need as it sounds like ASV isn't working for you.

Timed or not, my biggest problem is the struggle to breathe. Thats whats waking me up, thats whats keeping me from resuming breathing with a mask on.

Tomorrow we are gonna do an experiment. After I wake up and can't breathe with the machine anymore, I'm gonna set it to a CPAP of 20, press it against my face to breathe in, take it away to breathe out. If that doesn't work, 25. If that doesn't work, no machine is gonna help me.

You have had lots input on the ASV and it is still not working so yes another machine is probably a better call.   

The ResMed Aircurve ST or ..  

You mentioned that you wanted more of a Ventilator functionality Aircurve ST-A with iVAPS and Phillips Respironics AVAPS are both designed to enforce a specific amount of ventilation. 

... ENFORCE ventilation and both provide access to many controls to tune the experience to be more comfortable and effective than ventilation 20 years ago.    



I just noticed the screenshot you posted back in May.
   
Three times that day pressures became very high but your flow rate became very small, so lots of pressure but maybe not much successful breathing.  

If you share current screenshots here with key points like this zoomed into show just two minutes we might be able to give much more in depth input to help you sort this out. 

During these times did your Minute Vent and Tidal Vent fall?  Print off key points like this zoomed into show just two minutes of this times (including Minute Vent) with your Doctor to show how the ASV is failing you.   

Best of Luck!

WillSleep